WHAT IS THERE PROBLEM!!????

Okay so my neurologist has been trying to get me into the neurosurgeon for like the past month. Every time they send the referral it ends up that they don't take my insurance. Wouldnt you think that you would check to see the place that they want me to go to takes my insurance???  This has happened twice already. I should have been in to see the neurosurgeon and have my date set for the VP shunt surgery.  I should not be suffering this long with the medications not working and giving me horrible side affects. I almost was admitted to the hospital this past weekend because the Diamox that I am on made me extremely dehyderated. I ended up calling my insurance company myself and getting the names of the places that take my insurance. I am doing there job, thats what they get payed for. They acted like it was my fault that none of these places were taking my insurance. If they would have done there job in the first place.... this wouldn't have happened.

2 ER visits in 2 days

Well, I have been to the ER twice since friday trying to figure out this back pain thing. I know it is related to the disease that i have. First ER visit was on friday at around 5:30. I had let them know what was going on, and what kind of pain i was feeling that it felt like pressure in my spine. The way that it feels when i get the pressure headaches. Well, pretty much they looked at me like I was stupid and said there is no relationship between my disease and the back pain. Yet everywhere that i have read has stated that back pain can be a symptom of the disease. So i was in there for maybe 30 minutes tops. They sent me home with flexeril and ketoprofen and said I had back pain caused by something. That night i wasn't able to sleep, kicked my husband out of the bed because of the pain. Nothing was helping. The following day comes and I just couldn't take it anymore I had called my mother to take me back to the ER. She had the idea to maybe go to a different one because of how poorly i was treated in the first one. I got there about 10am got in right away and told them what was going on and they actually listened. Did a head CT, lab work, urine and all the good stuff. They started out small with the pain med in the iv nothing was working, so we decided that doing an LP might give me some relief. So we did the LP and as soon as they hit the spot I got instant relief of my back pain. My pressure was around 20, not bad but it gave me relief. I just don't understand why medical providers do not listen to what you tell them. Just because its not a NORMAL symptom doesn't mean its not one at all. If it wasn't related then how come I got relief from the spinal tap.

Eextreme Pain, WHAT DO I DO??

So, my back is still hurting like nothing else I have felt, I am use to the constant eye pain, the pain in arms and legs, and the constant head pain. This is a different pain like a dull ache. All the way up and down my spine. I tried to refill my medication through my neuro a few days back which it was declined. My husband and I had drove up there to find out why it had been decline. In his words were " I only find out whats wrong, and I don't feel comfortable writing for pain medication." So I was pretty mad as a few months back my primary doctor had quit writing the script because he thought my neuro was writing for the medication. Which he only did once. So now i have been stuck without anything for about 3 days. I am not sure what to do. I had phoned my primary doctor to see if they could fill it and let them know what was going on with the neuro. I hope that they are able to because i don't know if I can take this too much over the weekend. I thought about self mutilation to help take some of the pain away because you can only feel pain in one spot at a time. I just don't know what to do. There are no answers out there for me. No one will give me answers its just waiting. Im not addicted to pain medications but i am addicted to not feeling pain. When I am in pain i take it out on my family members, mostly my husband. I can see that he gets irrated with me taking pain medication but.... It makes me be able to do more things around the house. This is a cry out for help, for answers for something!!! OTC pain medications are not working and I keep taking more in more to try to help, I fear I am doing more damage than good to my body by doing so.

Bad ER visit

OK, so I went to the ER last night. Husband got home around 5:30 so we were there about 6pm. We didn't get in until 11pm. My head was pounding, my neck was aching and there was nothing that could be done. Sitting, and standing make the situation worse so yea i was sitting in the waiting room for that long. Crying babies, people yelling and yapping on there phone, bright lights and all i wanted to do was yell and scream and say SHUT UP. 

Well they finally call me back in there, assistant takes my vitals which were all pretty normal, then...she walks in. You can tell when someone prolly don't know what she is doing. Well she started to hook the iv line in which was extremely painful. When done right they should not hurt. She said the Dr. had ordered a bag of fluid, in which i know i was not dehydrated. After everything was hook up and she gave me my medicine through the iv line. Then she couldn't quite figure out why the bag was not wanting to drip, she spent almost 10 min trying to figure it out until it sorta started to drip. 

As I turned around to look at the bag I noticed it wasn't working at all, and to my surprise the bag was at my level. In order for the bag to work properly it needs to be above. It uses gravity! So now I started to get really mad because by the time i looked at the bag it should have been done. So I just decided that I wanted to go home. I started to remove everything put my clothes back on, unhooked my iv and started to walk out the door. They had stopped me because I had to sign a paper because I am still responsible for the bill. They acted like I wasted stupid or something. 

So today i am still wondering where in the hell did she receive her RN License from????

so mad

well, I called my neurologist again left a message cussed a little said what was going on. Then maybe a half hour later I started to hear the phone ring and on the caller id was there number so I booked ass to the phone. They only let it ring ONCE. How is a fat girl suppose to answer the phone in one ring? Can you tell me that. grrrrr i am so upset my brain hurts so bad you don't even understand. Its different then the usual pain is like a zappy twisty gouging feeling in your brain. It also feels like someone drop kicked my head into next year. The back of the going down the neck is also painful. Were can i get answers if i can't get answers from my providers?

I NEED ANSWERS!!

So recently I started to have new symptoms, I am not sure what they are coming from. First symptom is that it feels like I got kicked in the back of the head and second there is a zapping feeling on the right side of my brain that comes and goes slowly. I know its something that I probably should be seen for but I hate playing the waiting games. My husband and I have been trying to get a hold of my neurologist since last week. We have called, left messages, and called some more and no response. The only time that we ever get to talk to someone is when we drive up there. As of right now we only have one vehicle, husband got a new job with new hours which prevents me from going up there before they close. So, has anyone else felt this before? what should I do? I need answers, I have so many questions!

Recently Diagnosed With IIH

Well i am pretty new to this bogging, So I will try to give it a shot. 

I have just recently been diagnosed with Idiopathic Intracranial Hypertension also known as Pseudotumor Cerebri. It is a disease that is characterized by increased intracranial pressure without having a tumor or any other disease. It causes me to have very bad headaches that will last up to four days at a time in which i would have to go to the emergency room to have a therapeutic spinal tap. For me it went undiagnosed for a very long time which in turn caused my optic disks to swell to wear I have permanent visual loss and damage to my eyes. It also can cause pain and tingling sensations in your extremities. It also can cause tinnitus (ringing in the ears) and hearing loss. Often times with IIH you can hear your pulse within your hears. Other symptoms can include severe neck stiffness making it difficult to move, dizziness, lightheadedness, and balance problems which can range from mild to sever depending on the person. Short term memory loss is a big problem for me. Half the time I can never remember if have taken my medications or not. I need constant reminders. Also exercise can make the symptoms worse so at times it might become intolerable. 

So that is the basics of what I have to go through on a daily basis. I hope to connect with fellow IH'ers which i have done so on Facebook.

www.ihfoundation.org